Like many kids her age, 9-year-old Edi Mesa was playing at the park in her hometown of Coachella, California, back in 2002.
“I was on the monkey bars, and a girl stepped on my thumb,” Edi recalls. “But the injury just wouldn’t heal.”
It turned out that a tumor had developed in the injured thumb. Edi had the tumor removed, but over the course of the next two years, it came back twice. When the third tumor was removed, doctors discovered that it was cancerous.
“I was told I had sarcoma cancer and that my thumb needed to be chopped off,” Edi says. “But after getting a second opinion, a new doctor was able to take my case, operate on my thumb, and save it.”
Within six months of finding out about the sarcoma, doctors discovered that the cancer had already spread to Edi’s lungs. Fortunately, a drug trial she participated in was able to help stabilize the tumors. She still takes the medication today.
Years later, after having a severe chase of bronchitis with slight pneumonia, Edi checked herself into the hospital. There, doctors told her she had chronic obstructive pulmonary disease (COPD).
COPD is a series of progressive lung disorders that slowly destroys the air sacs in the lungs, interfering with air flow and making it increasingly difficult to breathe. About 24 million people have the condition, but it most often occurs in and in people who are current or former smokers.
Edi was just 21, and a nonsmoker.
“I didn’t smoke, and so that’s frustrating,” she says, explaining how the side effects of her sarcoma led to her developing what is considered a “smoker’s disease” far earlier than is typical. “Over the years, every time I was hit with pneumonia or bronchitis or an upper respiratory tract infection (URI), my lungs would scar more and more.”
“As a kid, I didn’t think of my condition as me being sick,” says Edi. “I thought of everything as another cold or flu.”
But that didn’t mean she didn’t feel the burden of her condition. Edi couldn’t help but think about how being sick meant missing out on a more typical childhood — especially given the fact that she had a twin sister. A healthy twin sister.
“Sometimes I look at my sister like a double mirror. I can see where I could have been,” she says.
When they were teenagers, Edi remembers driving her sister and their friends to the beach.
“They’d all walk around and hang out, sometimes have BBQs,” Edi recalls. “But I’d go sit at a coffee shop and read, because I couldn’t keep up with them, or how hot and dry it was, or the smoke from the BBQ.”
“When we’d go to a club, I’d sit at a table and watch everyone dance, which was hard,” she says.
Today, Edi’s sister is also a mother of three children. Edi herself is medically unable to give birth.
“When my sister first got pregnant, at that time I wasn’t told I couldn’t have babies, so I thought to myself, should I try?” Edi recalls. “But I knew I couldn’t risk getting pregnant, and possibly getting pneumonia, and as a result losing me or the baby. Now, I medically can’t have children.”
The bonds of family
As a child, Edi says she was more than aware of how her health was impacting the rest of her family: “As a kid, the first thing you think about is your family, and you want to do everything they say that might help. I come from a Hispanic family, so we don’t think of ourselves — we are a whole, not just one.”
“It was hard to see the sadness my family felt because of me,” she says.
But blood is thicker than a disease. Both Edi and her sister, as well as their brother, still live with their parents. Working together, they help Edi manage her condition, and help each other deal with life’s daily tribulations. They’re family, and those bonds don’t break easily.
“My sister is my nurse,” says Edi. “I have a hard time moving and using my entire body — I can stand but it’s hard — so, every morning she makes me breakfast and helps me.”
From there, a typical day involves taking two nebulizing medications for about 30 minutes, followed by using her inhaler. She then gets dressed and helps watch her baby niece, while her sister cleans or gets ready for her day.
“While it’s hard to make friends, because I can’t really go anywhere and do a lot of things people my age do, I have found friends online through gaming,” she says. “It’s nice to talk about different things without having to go somewhere.”
She also has a boyfriend of three years.
“He’s supportive. He knows all about my condition, knows all of my doctors, and stays at the hospital with me when I’m admitted.”
At night, once the family is all back together, they eat dinner together and talk. Evenings typically end with Edi playing a round of “Call of Duty” with her dad.
Making sense of a harsh outlook
A few months ago, Edi was told that she now has alveolar lung disease. This means that her lungs aren’t filtering out carbon dioxide like they should be.
“Now I wonder if I’ll die because of COPD, or because of this,” Edi says.
“When I was a kid, I was told I wouldn’t make it to 30. I’m 25. My health keeps getting worse, and my hematologist says I don’t have much longer.”
How does she cope?
In one way, she looks at her condition as just pushing the fast-forward button.
“My mom recently found out she has kidney failure from not managing her diabetes, and the seriousness of her disease made her ask me how I live like I do,” says Edi. “I told her, ‘Well, I’m not your typical 25-year-old. I aged from 9-years-old to now.’”
Edi says she also appreciates time more than she might if she weren’t ill. “I think everyone appreciates what they have, but I do think that being sick young makes you think outside the box a little bit more than the average person,” she says.
“You learn young that there are things you have to let go of. If you can’t control something in life, you really stop and ask yourself, is it worth a flare-up or hospitalization?”
Edi says that therapy has helped her make sense of things, and has filled a hole she didn’t know needed filling when she was younger. “I didn’t get therapy as a child, so for a long time I hushed away a lot of things in my mind, but a lot of things come back to surface over time,” she says. “I admitted I needed help, and I see a therapist pretty regularly.”
“Life is much easier and more fun now.”